*internal screaming*: Hi. I'm new here... - Foggy's "Invisibl...

Foggy's "Invisible Illness" Support

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*internal screaming*

BubbleMonkey
BubbleMonkey

Hi. I'm new here (ish). I joined the group a while back and have been lurking around a bit. I've tended to post in more specific areas, but for reasons that will soon become apparent I am not doing that now.

So I've just had a consultant appointment with my rheumatologist. About a year ago he diagnosed me with Palindromic Rheumatism, but things have changed a bit since then and I've been thinking there's now something else going on and wanting answers.

For background's sake I also got diagnosed with hypothyroidism a few years back and over the years have popped up with a few different deficiencies. Oh and I'm early 20s.

So anyway, back to the appointment. Things went half good. He agreed that things weren't acting like PR any more. He listened to my symptoms and we discussed things a bit. He also ordered an ultrasound and blood test. That's where things get less great for me and turn more annoying.

I no longer have the PR diagnosis (well I assume not- I don't think there's any ceremony to un-diagnose me, but it seemed pretty clear that ain't what I got any more so I assume that gets rid of my diagnosis). Aaand I have nothing to replace it with now. Things are too wide spread to be rheumatic (plus we've ruled out RA with that ultrasound). He (and I) are not convinced it's fibromyalgia. I don't think it would explain all my symptoms and he says I'm missing tenderness or something. And he also doesn't believe I have lupus (which until now was my best bet). The blood test I'm waiting on results for is to rule that out. I asked where that leaves me and he said "symptomatic treatment".

So basically I now have negative answers and will soon be stuck with no diagnosis and just treating whatever symptoms come along. Which given the extent of my issues currently probably means nothing cos I don't feel like things are bad enough to be taking heavy stuff, especially with no evidence it's the right stuff for the mystery issues I have.

And that brings us to the internal screaming. Not only am I now stuck with no idea what's going on again, but I don't know where to go next and I have lost the thing I can use to explain to people why my life is so pathetic and I'm not doing anything.

I don't even know what the hell I'm meant to put on my insurance declaration for holiday.

So yeah I'm currently sat here feeling thoroughly annoyed at my lack of answers and direction and wondering what on earth I'm meant to do next. How do I (or do I) treat it, what do I call it, do I keep looking?! I'm so freaking lost right now. And on top of all that I've lost my freaking support network cos I don't have that issue any more.

And that's why I'm venting here in the only place I seem to fit any more.

1 Reply

Welcome to the club, BubbleMonkey! I've been putting up with that kind of medical run-around for about 50 years. (I'll be 75 at the end of this month). I hope you get answers soon. The only time I DIDN'T have to go around in circles trying to get a diagnosis was in 2005, when I had cancer. I had ignored those symptoms, but THAT doctor, THAT time was on the ball. He picked up on my one and only symptom and sent me to the right specialist for testing. I hadn't even suspected it. As for my mystery symptoms, I've had different sets of them at different times of my life over the years, and usually solved the problem myself. Some turned out to be allergies, when I was your age. The latest mystery started in 2011, or so, and I finally got a diagnosis last year (of dysautonomia). There's no "cure", but there are treatments that help a little, and there's a Support Network organization, and just knowing what it is and what to expect from it makes it easier to deal with. Best of luck with your searches.

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